"I'm beyond impressed and
excited about your website!!!"
"I recently came across your website and am
happy and grateful that you compiled such a wonderful source for information. I
am 20 years old."
"BLESS you for your compassionate,
direct and VERY informative assistance!!!"
"I have just
come across your website. Your depth of knowledge and
insight bring a smile to my face, as well as the similarities in your
story www.fms-help.com/fibro.htm
to mine."
"After 5 years
of questioning myself about imagining the pains, I now feel a sense of
freedom. I am not imagining! I can move forward
with insight, thanks to you."
2. TV ADS
FOR FIBRO DRUGS
Dom wrote
recently: There's a fibro-drug commercial on TV that is very
inaccurate. The lady says something about "I won't let this thing stop
me." My husband was telling me about it, since I don't watch TV
much. The ad raises my hackles. We are the most hard-working,
high-achieving subset of people in the world. "Trying
harder" www.fms-help.com/trying.htm just makes things worse. This condition
affects every aspect of our lives. Recovery isn't as easy
as just swallowing their pill. Check out the list of my readers' occupations at www.fms-help.com/occupations.htm at
the time they came down with FMS/CFIDS. I believe it is a viral
infection of the brain and nervous system. Much more info about that on my
homepage at www.fms-help.com. FMS/CFIDS can
be disabling to the point where we cannot function as "normal" people do.
This is why we long for sympathy and understanding. We are not lazy.
In fact, "We Try Harder" should be our motto.
Here are a few
interesting responses I received--
Reader 1--
"Thank you for mentioning the Fibro med
[Lyrica] in your newsletter. In the advertisement it says that
it takes care of the pain of fibromyalgia. I went to their website and it
says that it does not address the sleep issue. I wholeheartedly believe
that fibro is rooted in sleep problems. When I get
4,5,6,7 etc. days of poor sleep, I definitely feel the pains creep up on
me. When they come up with a medicine to address sleep, I believe that
will start to address fibro. Lyrica is just covering up the pain that
results from a lack of refreshing sleep. They are not really understanding
the root cause. My friend takes Lyrica. The pain seems to be a little
less, although she has had bad weeks even though she takes this stuff, and she
still does not sleep well. Lyrica is numbing the pain but not addressing
the root of the problem. I went to the Pfizer website
and found a CONTACT US link. I selected a "general company
information" for a topic, then was able to enter 500 words or less. That
was the only place I found online to contact them and give them some insight
into how their commercial for Lyrica affected some of us FMers. Here's the
link: http://www.pfizer.com/contact/mail_general.jsp.
Reader 2--
"I tried the Lyrica I couldn't take it or the
cymbalta so my doctors just give up I have been living with this for 13
years and have never found a doctor who wants to deal with this
illness."
Reader 3--
"I hear you on the frustration over that TV
ad, which I think is for Lyrica. She's at a family picnic and just won't let FMS
get in her way, as she has "too many people" relying on her. I know what they
were trying to convey, but it can come out to make FMS appear to be
merely a battle of determination. Like people don't already perceive it as being
all in our heads! I took Lyrica recently for neuropathy
associated to the spinal injury that occured inconjunction with starting my FMS
battle in 1989. For the brief period I took it, I can truly say that for me it
was terrible. Bloating and abdominal discomfort was the worst, but tack on
worsened insomnia. Not like most FMS patients need added insomnia or
gastrointestinal symptoms! They don't mention many of the side-effects in the
ad...of course, they'd need a 30 minute spot for most meds to accomplish
that."
Reader 4--
"I AM SO GLAD that you mentioned about that TV ad! I am
tired of hearing about how she deals with her fibro now that she takes Cymbalta
and that it doesn't stop her! WELL, I AM SO GLAD TO HEAR THAT IT WORKS FOR
HER!!!!! At least the other ads were informative and gave people who
weren't ill an idea that there really was something wrong with us. This one
makes my skin crawl."
3. INSOMNIA
Reader 1--
"On most nights, i get 2 hours of sleep
and about every 3 or 4 months, i sleep 4 hours and those four
hours make such a difference. i can do something besides lie on
the couch all day. because of the lack of sleep, i'm usually too exhausted
to do anything else during the day. our lives have been so similar and i,
too, took melatonin for several years, but now that i'm in menopause, it's not
working. for the last 2 years, i've tried all kinds of
products to try to get to sleep, even 5-HTP, but it doesn't
work."
Reader 2--
"I have been searching for the cause of my
vicious insomnia for nearly 20yrs. After reading thru your website, I've finally
realised after all these agonizing years, what is wrong with me. It is a great
relief to me, to have discovered that I'm not a hypochondriac/mentally
imbalanced etc."
4. GUM
DISEASE
From a reader--
"After a terrible experience over a year ago,
I finally found a caring, compassionate dentist. I was able to have my teeth
fixed and was also treated for gum disease. A very mysterious thing
happened - my ever present pain in my shoulders and neck have been greatly
reduced to the point of (dare I say?) almost feeling normal. My pain in other
parts of my body seem to have lessened somewhat also.I still struggle to battle
my anxiety, insomnia, and fog but any small improvement is reason to
celebrate. It's interesting that the improvement came after this
dental visit- I can't contribute it to anything else as I have not stopped or
started any new meds."
From Dom: It
probably reduced the load on the immune system, which has a lot to do with our
FMS/CFIDS symptoms.
5. FATIGUE
NOT HELPED BY REST
"I was diagnosed with fibro about 15 years
ago and believed that I dealt with it pretty well through supplementation and
healthy eating. But lately the pain and FATIGUE has been awful! I
thank the Lord that I was able to retire last summer, it was earlier than I
wanted to (at 59), but at least I could. I was hopeful of getting
more rest and improving but I seem to have had more bad days than good, and feel
more tired than ever. And as we always are - I'm looking for help
and answers to this disabling fatigue."
6. SWINE
FLU
From a reader--
"THIS IS FOR THE MAN THAT HAD TO BE VACCINATED FOR
SWINE FLU IN THE MILITARY. THEY VACCINATED PEOPLE WHO
WERE AT HIGH RISK. AS I AM A VETERINARIAN, I THINK THAT I
WAS VACCINATED FOR IT EITHER IN SCHOOL IN 1976 OR 1977.
HOWEVER, I AM NOT ABSOLUTELY SURE BUT REALLY THINK
SO. ABOUT 2-3 YEARS LATER AS A RESULT OF STRESS AND POSSIBLY THE
INTERACTION WITH THE VACCINATION I CAME HOME ONE DAY FELT LIKE I HAD THE
WORST CASE OF FLU EVER AND HAD TO GO TO BED. WELL, I COULD NOT GET OUT OF
BED FOR ABOUT 1 MONTH. WENT TO THE DOCTOR AND HE CHECKED
ME FOR MONO AND OTHER THINGS AND WAS NEGATIVE. AS QUICK AS THE SYMPTOMS
CAME THEY WENT AWAY THAT QUICK ABOUT 1 MONTH LATER. BUT AFTER WARDS WHEN I
WOULD GET STRESSED I NOTICED I WOULD FEEL LIKE I HAD THE FLU AGAIN(NOT AS BAD)
AND WOULD GET A SORE THROAT. WHEN I WOULD REST UP IT WOULD GO
AWAY. HOWEVER, GRADUALLY STARTING AROUND 1992 I NOTICED
SYMPTOMS NEURALGIC, MUSCULAR AND FATIGUE, ETC. THEY PROGRESSED AND I
HAD TO PREMATURELY RETIRE FROM PRACTICE AND WAS IN BED FOR ABOUT 1.5
YEARS. I AM SOMEWHAT BETTER NOW BUT NO WHERE
NORMAL. THE REASON WHY I THINK THE SWINE FLU VACCINE
MIGHT HAVE HAD SOMETHING TO DO WITH THE CFS IS THAT I READ AN ARTICLE ABOUT A
YEAR AGO BY A RESEARCHER IN EITHER AUSTRALIA OR JAPAN THAT FOUND ANTIBODIES TO
THE SWINE FLU IN THE SPINAL FLUID OF ABOUT 97% OF THE CHF PATIENTS HE
TESTED. THAT WAS ABOUT THE NEWEST AND MOST SIGNIFICANT RESEARCH I THOUGHT
THAT HAD BEEN DONE IN MANY YEARS. THEN IT STRUCK ME THAT I BELIEVE
THAT I WAS VACCINATED FOR SWINE FLU AROUND 1977. THE WHOLE THING IS VERY
FRUSTRATING AND A REAL MYSTERY."
7. LETTER
TO NORMALS
Got this from a reader - well-stated from
FibroHugs!
8. COFFEA
CRUDA FOR SLEEP
Several readers wanted the details about
Coffea Cruda for sleep. Got this from Sandy--
"I take 3 - 5 granules under the tongue about
a half hour to an hour before I want to go to sleep. Sometimes I take an
additional 3 - 5 just before getting into bed. The package says take 5
granules 3 times a day. I use the 30CH. Mine says Made in Belgium by
UNDA. Distributed by Seroyal USA. I get mine from my DO, but I think
you can order this online. Don't use anything minty (like
toothpaste) a half hour before or after taking this. It will negate
its effectiveness. I hope this helps. - Sandy"
9. "THE BODY
BROKEN - WHEN PAIN COMES TO STAY"
From a friend--
This book is about neck/spinal injury and chronic
pain:
10. EMOTIONS AND THE
IMMUNE SYSTEM
From an immunologist / microbiologist--
"Many people have some version
of Fibro/CFS due to trauma. So many people with whom I speak started feel
badly after trauma. If you had low-grade inflammation all these years, and
now it is full blown inflammation, rebalancing
immunological responses may give major comfort. Also, pain is the result
of immunological responses, etc. You have nothing to lose in trying
[the immune balancing powder]. In reference to having a "broken
brain," as you know, there is a major involvement of
immune function with emotions and the nervous system--it is only articificially
separated by docs. Balance immune function and make a difference
in attitude https://www.securedcontent.net/legacy/web/resources/MindBody.pdf."
FROM DOM: This is a
fascinating .pdf document!
From a reader--
"Love ya Dom, so take that in this spirit,
but saying in so many of your explanations about fibro that you were an
overachiever or a Type A or that you were sick often as a child does not, IMHO,
help our case. Stress did not cause this disease. In my case, and I
know this is common, I had mono at 17 and my life was just
decimated. It had nothing to do with me either being Type A, overachiever,
overly athletic, deconditioned, stressed, depressed, going through major crisis-
none of those things. I know that you are totally the best, I've
been a reader for a long time as you know, but I personally have gotten either
100% "You aren't sick!" or basically it's your own fault, "You overexert
yourself!" and whenever one of us says anything like that, we are just
feeding others' needs to blame us, which they do because God knows, it's
like being around anyone who's experiencing trauma- people feel if they can
find in the victim some error or fault, then they know THEY won't be next in
line. And they very well could be.
In fact, I was just a normal teenager. Yeah,
I'd been an honor student and was back at it, but it was not
hard for me, didn't take any particularly hard work- though after the disease, I
lost all those gains because in college I could rarely attend and managed mostly
C's- for which, I was of course, blamed because I "didn't work hard
enough." All this while supporting myself entirely. And as for the
deconditioning BS, nothing makes me angrier. I started lifting weights at
12. I am one of the few with CFIDS apparently who just refused to stop
working out even when it disabled me completely, because I was honestly too bull
headed to give in to my body collapsing (okay, maybe some Type A). But I'm
so not deconditioned. I feel like it's all a trap. No one would
seriously challenge a cancer patient in this way, with either "You did too much"
or "you're not suffering enough visibly, so you must be making it up."
It's one of the things that I feel makes us sicker, adds to the stress that I
don't believe brings on the illness but certainly makes it worse once it's
gotten hold. So please do not think I'm angry at you, I just hope you
don't feel the need to keep buying into this whole BS about how we "got
ourselves sick" by "doing too much." If that were the case, Richard
Branson of Virgin Records, etc., would have been sick years ago. There
couldn't be a president of the united states, or anything. This isn't our
fault! I know plenty of people who were "working themselves sick" years
ago and never got sick.
Well, okay, that's a pet peeve of mine, since we're
unloading. I'm sorry this is a bit garbled. I have a little four
month old on her play mat behind me rolling over, and I'm typing with my head
looking back over my shoulder. So I have to go. Never
apologize for being angry, though I appreciate what your male reader wrote about
Jesus. Truly, He's the only one who really knows what we go through, and
ultimately He's the only one we can really expect to support
us."
12. DO
PEOPLE UNDERSTAND YOUR ILLNESS?
From a reader--
"After years of this being a 'sore spot'
(sorry about the pun) with my friends and family; I needed more personal
counseling to deal with it. My counselor 'gave me permission' to rid the 'toxic
people' from my life. It isn't always easy (yes, some are siblings), but it's
easier than having to deal with their ignorance. Now I try to surround
myself only with supportive people and I'm in a more 'contented
place'."
13.
POST-POLIO SYNDROME (PPS)
From a reader--
Polio:
the virus and the vaccine
From Dom: Years ago I spoke by phone with a man
who knows a lot about cancer, etc. He told me that the Jonas Salk
polio vaccine was tainted with SV(Simian Virus) 40, and also many other
viruses. He believed this is what is causing so many strange cancers
nowadays. These cancers are transmittable to offspring, which could be why
so many children and even babies die of cancer now. This link is just one
of many you can google about SV40. I took the polio vaccine on a
sugar cube in my elementary school around 1960.
14. SKIN
SENSITIVITY
From a reader (this is a typical email I
receive about this subject)--
"I need to ask you a question about
this wicked illness - fibromyalgia. I am aware you are not a
medical doctor or such, but you seem to understand this illness better than any
doctor i have seen. Anyway, my question. Does fibro cause some sufferers
skin to become ultra sensitive? I ask this because my skin is so sensitive/sore
that i feel like i have been "sand-papered" all over! I cant even stand
it if my hubby gently rubs my arm or back affectionately. Fibro has stolen our
love life because i cant stand to be touched - it hurts too much and also
because i am too exhausted to even think about making love. This isnt fair on my
hubby - i feel like i am letting him down as a wife. I am SO miserable at the
moment as i am going through another fibro/cfs flare up. I'm barely getting any
sleep despite the fact i am totally drained. I HATE THIS ILLNESS and what
it is doing to me and those around me."
15.
FIBROMYALGIA AWARENESS ITEMS
From a reader--
"Go to www.fmnetnews.com - they have buttons and bookmarks
that read "Fibromyalgia is real." Click on "It's
real."
Also, you can go to www.chronic-illness.org/fibromyalgia - click on fibromyalgia after you go to chronic
illness.org. She has T-shirts, bags, etc. for
sale. Just click gift box and there are buttons. But I like the
ones from Fibromyalgia Network www.fmnetnews.com the most."
16. AMINO ACIDS &
FIBRO
From a reader--
17. DOM'S UPDATE
My Perfect Day
I had a gloriously "perfect" day last Friday! Although my sleep had been erratic the previous few nights, I was able to take advantage of a School Holiday on Friday -- I not only had time off, but also had the health and strength to take what I call a "mental health" break! So, instead of finishing our taxes (the project I was going to do), I decided to take advantage of this wonderful fortuity! I got in my car and decided to drive a bit. Well, I drove all the way to Jacksonville! My readers will know that I have not been able to travel more than 25-30 miles since being exposed to mold for a year in my former workplace www.fms-help.com/mold.htm in 2005. I found myself 50 miles from home, and feeling well! No debilitating collapse, mental fatigue or misery of any kind. I parked the car, put money in the meter and walked several blocks to the Jacksonville Landing, a place I had wanted to see for decades. I got lunch at the food court, then had to hurry back to my car several blocks away before the meter ran out (ah, the joys of visiting a big city). I also stopped at a thrift store to look for clothes, went to an art museum and the downtown library. On the way home, I visited a friend in the hospital. The weather was just perfect my outing - it was overcast, but not sunny, rainy, cold or hot. On the way home, I stopped at the grocery store to get supplies to make lasagna for my stepson's visit the next day, who was bringing his wife and their new baby (my husband's grandbaby #5) for a visit. I arrived home that evening with plenty of energy and feeling "normal!" What a marvelous day! All I can say is "THANK YOU, GOD" for such a blessing! Only those of us with FMS/CFIDS know how wonderful it is to have a day like that. My "good run" lasted at least a week. Yesterday I woke up with a scratchy throat, but that's my own fault for falling asleep while reading and eating popcorn.....ha!! A list of things I use to be as functional as possible is at www.fms-help.com/what.htm. These include meds, supplements and lifestyle changes. Well, even though the taxes aren't finished, I had a wonderful day of relaxation and got to see some new things and get out of my little world and off my 25 mile leash. I hope all of my fibromite friends can have good days now and then to remind us just how sweet life can be!
It still bothers me
at times when people don't understand my limitations and think I am not trying hard enough or that I am a hypochondriac, but I have come to a place of peace about
it (most of the time!) However, we can all do something on May 12 to help FMS/CFS
Awareness Day by sending out an email to our friends. But let's not sound whiny. Everyone has their problems. Ours is just more misunderstood than others. You can find some helpful articles on my site at www.fms-help.com to share with friends and family to increase their awareness of our "invisible" illness.
Dominie
==================================================
II Corinthians
1: 4 - "Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic
Fatigue Syndrome sufferers and their families.
Return
to Dominie's FMS/CFIDS Home Page
DISCLAIMER: I am not a medical doctor. I
am a fibromyalgia/chronic fatigue syndrome survivor. The purpose of this website
is not to diagnose or cure any disease or malady, but is presented as food for
thought. This information cannot take the place of professional medical
advice. Any attempt to diagnose and treat an illness should come under the
direction of a physician. No guarantees are made regarding any of the
information in this website.
